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HB 1019

Public health; Oklahoma Rare Disease Advisory Council; purpose; appointment procedures; membership requirements; annual report; membership terms; vacancies; term; effective date.

2026 Regular Session Introduced by Carri Hicks and 1 co-sponsor

Oklahoma bill creates Rare Disease Advisory Council to advise state policymakers on rare disease issues through formal membership structure, appointments, and annual reporting requirements.

Referred to Appropriations and Budget Health Subcommittee
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Bill Summary · HB 1019

Legislative bill overview

HB 1019 establishes the Oklahoma Rare Disease Advisory Council, a formal governmental body tasked with advising policymakers on rare disease issues. The bill outlines the council's membership composition, appointment procedures, operational requirements including annual reporting, and term lengths for members.

Why is this important

Rare diseases affect millions of Americans but receive limited research funding and clinical attention due to small patient populations. Creating an advisory council gives rare disease patients and experts a structured voice in state health policy, potentially improving access to treatments, clinical recognition, and coordinated care for conditions that are often overlooked in mainstream healthcare discussions.

Potential points of contention

  • Funding requirements: The bill's fiscal impact is unclear; establishing and maintaining a council requires staff time and operational costs, which may face budget scrutiny given the current committee referrals to appropriations
  • Council composition and representation: Questions may arise about who gets appointed (disease groups, patient advocates, medical professionals, state officials) and whether representation is truly balanced across diverse rare disease communities
  • Actual policy influence: Without clear legislative authority or mandate for state agencies to implement council recommendations, the council could become advisory-only with limited real-world impact on rare disease care and research priorities

Compiled from official sources — confirm details with the bill’s official record.

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